Here is my first post and ALL MY PROBLEMS!

kerridiculous wrote:Hey everyone. I'm Kerri and I'm 18 and I have OSA and it sucks, I'm sure you understand. I was diagnosed last year, and I still DESPISE my cpap machine. I hate it, everything about it. I hate the fact that I have to wear it, I hate the problems I go through with my provider company, I hate how uncomfortable and annoying it is, I hate how time-consuming cleaning it is, I hate spending money on distilled water AGHHHHHH.

The first thing I'd like to know is, how can I get all my information MYSELF? My provider company is so annoying. They are impossible to deal with. My primary person is always changing because everyone keeps getting fired over there, so my records are everywhere except where they need to be. I don't really know how this thing works, but I have to send my card out and they are SUPPOSED TO send me back my report. I sent it once and got one report, so I have absolutely no idea how I'm doing with this thing. Just to give you an idea how incompetent they are, my machine broke so I had to get a new one from them. I brought it home and attempted to go to sleep, only to find that they set my pressure to 4 cm instead of 6. I know thats not that big of a deal but I wasn't getting enough air to breathe. Anyway, I know people read their own results and set their own pressures, so how can I do that?? I'm sick of dealing with them.

Secondly, please, please, please tell me someone has an easier way to clean this stupid thing. It takes me so long to wash out all the little parts and sometimes I just don't because I don't have the time or the patience. I don't want to end up with a sinus infection but sometimes just can't clean it.

I tried all different kinds of masks, and they all seem to drown me. I wake up in the middle of the night with ice cold rain out puddled in all the crevices, which is why I'm stuck with nasal pillows. It's bad because I get sick a lot and when I'm stuffed up I can't use the pillows. I'm sorry, I cannot make my room warmer. I need to be cold to sleep, I know it's weird but i can't help it. Sometimes it's so frustrating I just disconnect the humidifier and painfully dry my nose out because at least I stay asleep through it.

So there's a few. I'm sorry for ranting like this but it's just so frustratinggg after a whole year. I wish I could be like one of those people that worship their machines for changing their life - this has done NOTHING for me or my energy levels or anything!
HEEELLLPPP hahah.

kerridiculous

I opted for hose covers and choose an insulated one for camping the nights are cold.
the other is breathewear for home use it is found on their site. Both are about twenty $
I found I needed a sock made to size for the short tube on the mask, and now I am rain free.
Just my imput for a limited income.

First of all, to all who have posted on this thread: This is one of the most useful threads I have read here yet for a newbie like me.

As far as the CPAP therapy goes in general, I am an engineer by trade, and into biology/anatomy by hobby. So, I understood first exactly what the problem is, and how it was to be treated. I did the research, got a study done, etc. so I knew exactly what I was up against. (My apneia is very severe, with an AHI of 96 measured during the study. And like most folks have mentioned, wish i had dealt with it 10 or 15 years ago.)

For treatment, I took the whole thing as an engineering problem, because that really what it is. (Even my doctor mentioned that I will probably end up designing my own machine!) I did lots of research here, and on other lists. I knew after my sleep study pretty much what what I would need for a machine and mask. When I got my prescription, my guesses were quite close (although the pressure was less than I expected ).

Although I have excellent insurance, I opted to purchase my equipment outright. Now, I am responsible for my choices, and can change things as much as I want/need. So far, nothing really needs to be changed and that is good. Careful selection of quiet equipment even lets me occasionally hear the lions next door roar, something I would otherwise dearly miss. (I am still toying with the idea of setting up a microphone and earbuds to allow me to hear the lions 'talk' more!) I am actually enjoying the challenge, even though it is still a royal pain. But each night gets easier.

As far as rainout goes, I have yet to experience it (only 5 nights of therapy!) I am using a 12 foot insulated hose. I went with a long hose so that moving around would not pull on the machine. The first six feet is standard hose, and the final 6 feet is the Resmed ultraflexible hose. This hose with its insulation is very hard to clean, so that will be the next engineering challenge. In the meantime, I 'titrated' my humidity level until it was just adequate to do the job. So signs whatsoever of condensation in the hose. Next experiment is to try removing the insulation to see if it is really needed. (I think the very dry Nevada climate helps in this regard.) Lastly, I think using a full face mask (my choice, not the doctor's) reduces how much humidity I need. I am also doing a better job of keeping my mouth closed, which helps immensely. Ultimately, I may experiment with a nasal mask and a chin strap just to see if that would work as well and be less of a hassle to get to seal well (which the Quattro actually does).

nice to meet you too,

I love my machine, i used to wake in the morning with a headache that made me feel i had been kicked in the forehead by a mule! i put up with that for years because i did not recognize it as a symptom of sleep apnea! My attitude would probably have been the same as yours when i was 18, the last thing you want at that age is anything that makes you stand out for the rest of the crowd such as wearing a mask that makes you look like hannible lectres wife! I think that fact that you don't feel in control of the whole thing certainly would not help so hopefully if you get a copy of the manual from rested gal and learn how to change your own settings and get your own data- it will all make a bit more sense

as for washing the set up, i read the manufacturers suggestion of pulling the mask apart each day and washing it and as quite a few of the others said i thought that would lead to more wear and tear on the masks- it seemed like over kill too. I use a moist wipe- a gentle face wipe and wipe and and clean the silicone seal every day, i use the same wipes on my face each night before i hook up- perhaps once a week i pull the mask with baby shampoo. The hose, i disconnect from the mask and the machine and hang up so that if there is any moisture in the hose it can drain out and dry and occasionally i wash it in baby shampoo too- probably the thing i wash the most frequently is the headgear and my chin strap- infact i have 2 chinstraps so that i can wash one and have one ready to go all the time just in case i have drooled a bit- the headgear i tend to wash once a week when i am in the shower and i jsut use the same shampoo that i use for my hair- i figure that the head geat warrrants a bit more attention because of hair oils.

I really do love my little bedside buddy! it has cured my headaches, i have had severe reflux for years and it has helped that, i no longer wake up needing to go to the bathroom 2 0r 3 times per night- what i was really hoping for was less fatigue- i have MS and fatigue is a big factor in MS but it was hoped that treating the sleep apnea may help reduce the fatigue- i do find it easier to get up in the morning these days, so i guess that is an improvement but i still feel like limp spaghetti a lot of the time so i am hoping that it is just early days and perhaps i am repaying years of sleep debt- i have only been using my machine for 4 months. Finding a mask i really liked and that i could use with my machine (my machine is picky about mask choice) took a while- i had been using a mirage micro and it was OK but i did have to fiddle with it for a while to get a good seal, then i decided to try the activa LT and it is great! it feels like i don't have a mask on really- at leasr i am much less aware of ith than the other one- the leak rate is right down to zero without any fiddling -my only complaint is that i can't wear my spectacles with the mask on and having reached the trully advanced age of 47 my vision is appalling without my specs, my bedtime reading is a thing of the past now- bad habit anyway but i miss it!

I hope you can build at least a grudgingly good relationship between yourself and you bedside friend- just remember that although it may be a pain in the neck, it really is trying to do the best for you